In May 2022, the Strategic Programmes Office within the HSE began leading the development of Ireland’s first National Strategy for Genetics and Genomics.
The National Strategy for Accelerating Genetic and Genomic Medicine in Ireland, published in December 2022, defines the actions required to support a focused model for genetics and genomics in Ireland and will allow the HSE to develop a genomics service that improves health outcomes, drives down the cost of care, and fuels scientific innovation and discovery.
Purpose and Guiding Principles of the National Strategy
The purpose of developing a National Genetics and Genomics Strategy is to begin the process of enhancing Ireland’s Genetics and Genomics service by having a single national strategy and implementation framework encompassing care provided across acute, primary and community settings and spanning all ages.
The strategy addresses issues like shortages of trained genetic specialists, knowledge gaps in the clinical workforce, the lack of genetic/genomic literacy across healthcare professionals and the public, and the policies needed to make the service ethical and inclusive. It also proposes the creation of a centralised national body with responsibility for the oversight and coordination of genetic services.
Graphic of Guiding Principles
The guiding principles underpinning this work will ensure that the National Strategy is:
- Responsive: Given the speed at which the fields of genetics and genomics are progressing, we will remain agile and adaptable to advances in scientific knowledge and tools and their clinical and research applications
- Ethically Grounded: The use of personal data will meet the highest ethical principles for clinical practice and research and reflect the voice of the citizens of Ireland
- Trusted: Effective governance will ensure that Genetic and Genomic clinical services and research are delivered in a manner that fosters trust and builds public and patient confidence in precision medicine
- Empowering: Patients and their families are empowered to make informed decisions about the use of genetic and genomic tests and health data in the delivery of their care
- Inclusive and Accessible: Genetic and genomic services and research will be equitable, inclusive, accessible, responsive and respectful of ethical, cultural and socio-economic diversity
- Evidence-based and Cost-effective: The translation of advancements in genetics and genomics into healthcare services will be evidence based and in the best interest of our patients while remaining cost effective and reducing waste
- Collaborative: To advance knowledge and fuel innovation in genetics and genomics, we will work collaboratively both nationally and internationally, for the benefit of patients
- Patient- and Family-Centred: Services will be delivered in an integrated patient and family centred manner
Graphic of Areas of Work of Working Groups
National Strategy Steering Group
The development of Ireland’s National Strategy for Genetics and Genomics was led by a steering group of experts that included representatives from a range of clinical specialties in Ireland, academic and patient representatives, and international experts in the area of genetics and genomics. The steering group was chaired by Dr Mark Bale, former Genomics Advisor to the UK Department of Health, and supported by the Strategic Programmes Office of the HSE’s Chief Clinical Officer.
In addition, four working groups (each with a diverse and specially qualified membership) were established to deal with specific facets of the strategy:
- Policy, Communications and Engagement
- Data and Infrastructure
- Workforce and Collaboration
- Clinical Practice and Innovation
Including patients, researchers, and healthcare professionals – both within the membership of the working groups and through external engagement – in the development of this strategy was critical to our work. As part of that effort, the Strategic Programmes Office hosted a number of interactive informational seminars that were well-attended and well-received. You can find the recordings of these seminars at the links below.
Documentation and Further Reading
Resources on Medical Genetics Testing and Related Services in Ireland